Had my Mirena IUD removed

[Wisegirl]

Had it removed 4 weeks ago exactly due to terrible problems from it. I wont post my story unless you want to know. Last week I had pain on my left ovary and today pain on my right. Its almost like a pinching feeling. Leads me to believe it (they) are cysts. When I normally am not on BC I have 28 day cycle. But not sure what to think since just having the IUD removed. Anyone have experience with this ?

[kaydiane]

What problems did you have?

I had the mirena for 4.5 yrs. Once I had it removed I did not have a period for 3 months and like you I had pinching etc...They performed a scan and no cysts found...

[Wisegirl]

I got the IUD on 3/21/06 and loved it ! Insertion was painful but not terrible. I loved not having to worry about pills, patches, condoms whatever. Well about 1 month after getting it I developed acne. It wasnt terrible but I never had acne before. I figured it was from the hormone in the IUD. I could deal with that. In mid - July I developed a yeast infection that would not go away. (I also had one in April but it went away with meds) I had it from July-Sept and even after that I would have bouts of itching and irritation. My dr's told me it was from one of the following detergent, soap or toilet paper. I have always used free & clear detergent, Dove soap for sensitive skin and Angel Soft toilet tissue. They told me to change them one by one until I found out what was causing the irritation. I didnt do that, I figured I have been using these forever why would I need to change now ? I asked if it could be from the IUD and was told no it wasnt a side effect. So everytime I got it I would treat with OTC. They went on until I had it removed. I started suffering with depression, irritability and complete exhaustion. My hair also started falling out and I was having memory loss. I can compare the memory loss with the type you suffer during pregnancy. The one who took the brunt of my mood change was my 8 year old. I was unable to cope with him being 8 and acting they way he did. I swear I think I really could have beaten him, I wanted to. I have gotten to the point where I did push and shove him. I lost my sex drive. It didnt decrease it left completely. I didnt have sex for 2 months at a time. I had no desire for it. When I gave in to DH it was extremely painful. I did want to be with my husband but my body refused.
I did some internet research and came across forums of women who were having the same issues as me ! Some were more severe and they needed depression medications (which btw werent working). I decided that I needed to get this removed ASAP. I called the dr and 2 days later it was removed on 2/8/07. Removal was not painful at all. When the dr questioned me on why I wanted the device removed I told him the story. Do you know what he said to me ? That these are not side effects of the Mirena. BULLSH.IT !! I see it as my body did everything it could to fight off this foreign object inside of me. That day he asked me when the last time i had an infection and I told him just on Monday that I was itching. So he took a culture and what a surprise I had a bacterial infection !! He told me once again that it was from my soap and not the IUD. Gave me a prescription for some vaginal gel. Which I didnt use and guess what ?? The itching and irriatation were gone ! 2 days later my mood returned to normal. I have not had clumps of hair come out in my hands. I can sleep 6-8 hours and feel great ! I can go from the living room to the kitchen and remember why I was going there ! 11 days after removal my sex drive returned full force ! DH is very happy. I am still dealing with the acne but its slowly going away. It seems to be like a cystic acne.

[kaydiane]

OMG you had some problems...I thought it was great, no periods at all. I have many friends and even my sister with it fitted and they all think its the best thing they could have done. I have read about other people with mood swings and weight gain though. I was informed that the hormone release was minimal. It had to be because i am allergic to the pill etc...I guess we are all  so different though and as I said I did read about other people having problems...

[jenstam]

I had mirena for about 6 months and it was the worst 6 months of my life!!! I kept telling the doctor all of the problems I was experiencing were due to the mirena iud but she didn't think I was right. So I finally had her take it out and got the copper t iud and LOVED IT! I will get that after this baby is born again. No problems whatsoever and no hormones to mess with. Mirena was a nightmare. I'm sorry to hear you are having problems still. I didn't have any once that beast was removed!

[taysmommy]

i had a bad experience with the mirena as well, i had it removed on jan 12, i was having side cramps, and i couldnt find my strings, the doc said that it had somehow got lodged in there and was poking me on my right side, i noticed this in december but he wouldnt take it out, he said wait one more month, it was the most painful month of my life! i will never use it again! and also i was ttc, i bleed for two days after it was taken out, then ovulated 14 days later, was suposed to start on the 10th of feb, but didnt and still im not pregnant, so i think it may have messed with me somehow, and i still dont know why af is a month late! grrr i hate the iud

[kaydiane]

your periods will take some time to get back to normal...
I really can't believe all these bad experiences, I had mine removed to try for a baby and I want it back again as soon as I have had a baby. before the mirena my little sis had bled for 18mths continuously she has pcos. After 8 weeks with the mirena, nothing..she thibnks its a miracle. I guess we are lucky.Baby dust to ya xx

[AndiJ78]

Same here, I had a wonderful experience with Mirena. The hormones are incredibly low, I cannot imagine that the problem can be directly related to that alone. Heck, reading wisegirl's post sounded like everything I am going through now being 4 mos post delivery with my son and i don't even have the Mirena as my dh got fixed in Dec. oI have even considered getting it placed again anyway once I wean and my af resumes as it made it so much easier to deal with af.

I will still endorse it as I know far more with good experiences than bad. No one form works for everyone, it is always hit and miss.

Andrea

[Wisegirl]

Well Andi they ARE directly related to the Mirena. You can yourself call Berlex and they will advise you of these side effects which are more common then they origiannly had stated on the information. Thats why there is a class action suit against them.

[AndiJ78]

interesting, I hadn't heard and i am usually pretty current on that kind of info. Well, at least the symptoms are gone now, right? No need to get snippy, I was just commenting that they sounded like PP symptoms, much like i experience every time I have a baby.

Andrea

[Wisegirl]

Remember they thought the patch was "safe" too. Although I never had any problems with that. But knowing now what it can cause I would not go back on it.

Do a search on Mirena IUD forums and you will be surprised at the amount of women that are enduring these effects. Some way worse than mine.

[Wisegirl]

No baby dust for me LOL !!  I'm not TTC. I just wanted relief !!  NFP here now !

[lovethebops]

Whoa!! This is a very interesting post..I had no idea...Wise girl...Can i have the baby dust, I AM ttc, LOL!! I had considered Mirena after I gave birth to #1, but was afraid of the whole IUD thing, so i went back on the same pill i was on before i got pregnant. I think it is good to hear all sides of the story, and i know I will never try Mirena, pills work better for me anyways.( well they did before i was ttc, lol:} Hope you are feeling better soon and back on track, Take care..

[peekawho]

The same sort of thing went on years ago about silicone breast implants.  Millions were paid out in class action suits.  Horrible symptoms all over the place.  Guess what?  Not a single study has ever conclusively linked them with any health problem.  

It is extremely common for women to have hormone disruptions that can cause every one of your symptoms.  If you believe strongly that something is the cause, and you take that thing away, 99% of the time the symptoms will clear up, too.  

I'm not going to say its impossible, b/c very few things in life are impossible.  But unlikely.  Lets say that.


Mirena does have minute amounts of hormones that act locally on the uterine lining.  And the patch is still in use, and is safe and effective if used in properly selected patients.  It is very different than Mirena, it is a systemically absorbed hormone.  You can't compare the two.

If you believe the Mirena is the cause of all your symptoms, then its a good thing you got rid of it.  What are you going to use instead?    

[Wisegirl]

I have been on Depo, Lunelle (off the market now), various pills (mini & dual hormone), patch and now the Mirena. This is spanned over 19 years. Out of all those only the Mirena caused any problems.

I didnt compare Mirena with the patch. What I said was remember they thought the patch was "safe" too. Nothing was said in 2001 that there was an increased chance of blood clots. Not just an increase but double the chance. I know because I was on it the day it hit the shelves. Its still my preffered method but since I am almost 35 I am hesitant to go back on it. I know they are in the works of another patch. Its in clinical testing.

Nothing was said about these side effects of the Mirena but ironically if you call Berlex 1-888-237-5394 they will tell you they are known side effects. I called their adverse reaction line and thats how I found out they were indeed side effects and my dr didnt even know about them.

Back in 1996(ish) there was a class action lawsuit against Norplant for playing down such side effects as irregular menstrual bleeding, nausea, headaches and depression. People were not adequately warned of the extent of these side effects.

So the bottom line is I will continue to the best of my ability to tell my story to try and stop women from getting this device. If I stop 1 than than I win.

[peekawho]

If you read the known adverse effects of any drug on the market, you will no doubt be horrified.  People die every day from Tylenol.  This does not mean that Tylenol should be off the market, or that people should be warned away from using it.

Mirena is a safe and effective contraceptive device used by hundreds of thousands of women.  It even being used globally now to help prevent unwanted pregnancies in disadvantaged nations.  Far more women are harmed, or even die, as a result of pregnancy than experience some hair loss, depression, menstrual irregularities, or acne from a very widely used and effective device.  

Even placebos can give people "side effects".  I'm not saying its impossible that you are having some minor effects.  But the Mirena acts LOCALLY, not SYSTEMICALLY.  Remember my analogy of the silicone breast implants?  Remember the tearful testimony before Congress of all the women irreparably "harmed" by them?  As I said, furthur studies show this had no basis in fact.  Group hysteria and suggestibility was responsible for a great deal of those symptoms.  Yet people profited from the lawsuits.  They sure as heck didn't give the money back, did they?

The fact that a couple hundred women are starting a class action suit is testimony only to our countries insatiable appetite for lawsuits.  Warn women away from this effective BC device, and I hope that they don't subsequently become harmed from using a systemic hormone, or have complications from an unwanted pregnancy.  Or choose to have an abortion.  

Good for you for having it removed if you feel uncomfortable with it.  We are only responsible for our own actions.

[peekawho]

And that is not to say its the right choice for every woman.  But it IS a choice, and a viable one.  The fact a fraction of women experience some discomfort does not change that fact.  If someone tries it, and for whatever reason doesn't like it, the she should get it removed.

BTW, you didn't answer.  What will you be substituting for BC now?  I could share my copper 7 horror story, but I recognize that that was only MY experience, and does not necessary lead to the assumption no one should use it.  Its a good method too, despite what happened to me.  

[Wisegirl]

I NEVER said it should be removed from the mmarket. However it should have all major side effects listed. You may not think depression is a big deal, but it is. Or cystic acne being a big deal, but it is. Or the ovarian cysts I now have, But they are. and they hurt like h.ell. How would you like your hair falling out in clumps ? I dont think you would. How about having memory blackouts ? Not a good thing. How about not wanting sex ? My DH didnt like that aspect. How about finally having it and it being painful ? That wasnt good for me. Would you go on a birth control if you KNEW they were known side effects ?? I think not. BTW-I had no problem with irregular menstral bleeding, that I was expecting. I had some but it wasn't terrible. Its everything else that was the issue.

As for "Far more women are harmed, or even die, as a result of pregnancy ..... "
Not in this day and age.

[Wisegirl]

Right now I am thinking of going with NFP (gulp) and good old condoms. I have also heard horror stories of the copper IUD as far as bleeding (my dr also told me), also having the greater risk of uterine perforation. I would like to go back on the patch but I am older and the risk now scares me because I have an 8 year old as well as a 2 yr old. I despise taking pills but will if I have to. Which is precisely why I loved the patch.

[peekawho]

I can almost guarantee you that all those things are not due to the Mirena.  However, if you believe they are, then more power to you.  I will be very interested to see if you remain miraculously healed of all your many maladies over the coming weeks.  Or will you become one of those women who believe that a temporary device ruined your health forever?

Would you ever take a Tylenol if you were prominently warned that you could die?  People take them every day.  Yet some die.

You honestly believe that pregnancy carries little or no risk to health?  It does; even "in this day and age".  I work in Labor and Delivery, and care for the complications every day.  I've even seen a death. In this day and age.  And that's in the US.  Lets not talk about Africa or other under developed nations.

Do what you want.  But don't hurl your scare tactics at others.  The "side effects" are VERY UNCOMMON.  If they were devastating millions as they are you, Mirena would be off the market in a heartbeat.

As I SAID, if someone believes it isn't right for them, they can remove it.  Simple as that.

I never said your problems weren't a "big deal".  Obviously, you feel very affected by them.  But THE VAST MAJORITY of women who use Mirena don't have them, or have them to a very minor degree.    

Just like most people who take Tylenol don't die or have liver failure.  Its still a safe drug, and  no one goes around screaming for people to avoid it.  It has improved countless lives.

I can see this will go nowhere but downhill.  You feel a great need to "win" this argument.  I'll wait and see if you remain free of the devastating depression, hair loss, ovarian cysts, and loss of libido.  I have most of those things too, and I'm not even on BC.

Oh, and I bet you get pregnant within 6 months.  Bet you anything.  I know 2 other women who didn't like their forms of BC.  They quit, and used "natural" methods.  They were pregnant almost immediately.  Often times, there is an occult desire to conceive again, and some women need to feel it was "out of their control"--they couldn't use effective BC.  So it doesn't look like they chose to conceive again.  

You "win".  I won't answer again.  I'll wait and see the BFP post.  

[kaydiane]

I agree - I have recommended the use of the mirena to so many people and they all love it.I also got pregnant very soon after having it removed, so no long term recovery. I honestly thought it was fantastic, very comfortable, no periods, no worry of pregnancy and no effects from the hormones that I am allergic to. If the mirena does cause cysts I can't understand why they would give it to my sister who has been suffering for so long due to polycystic overies...The normal pill made my tongue swell so bad i stopped breathing, yet millions use it  - I had a very rare allergy to the hormones. It was also explained that the mirena is safe from that as it doesn't release the hormone into your system.


Each to their own but I wouldn't like people to be scared of trying it because they read some negative feedback.

I have first hand experience of the placebo effect as I was part of a clinical trial and unknown to me I had a placebo. Some other people in my group had the real thing and started to feel ill. All of a sudden so did I. To me it was very real, I didn't think that I had a placebo. Once I was told and shown the paperwork my symptoms went.It is therefore very possible to feel symptoms just because others feel them.

[Wisegirl]

I am not planning on getting pregnant and am taking every natural step to prevent it.

You seem like a fairly intelligent person and you shouldn't always belive everything you are told by medical professionals. They are only instructed by the pharmacutical companies.

Do your research !

[Wisegirl]

As for NFP. I know people who have been doing it for 12+ years without an incident. But you have to stick to it. So if you know your body, like I do mine, there isnt a problem.

Your right you aren't going anywhere with this argument because it wasn't you. I will continue to tell my story in hopes that women will be smart enough to do all the research. Not just want their dr's tell them.

[lovethebops]

AMEN!!

[kaydiane]

I hope that this helps some to make sense of it all . Just a little bit of info

Research - NOT FROM PHARMACUTICAL COMPANIES NOT FROM BERLEX - INDEPENDANT STUDIES FROM REAL WOMEN.

The Mirena IUS is like many other types of Intrauterine Contraceptive Devices (IUCD's) in that it is fitted by a doctor and remains in the womb for a fixed amount of time, after which it must be changed. It is different, however, in that it is much more effective than usual IUCD's and avoids many of the side effects that put women off this choice of contraception.

How Effective is the Contraception?

1000 women used the Mirena IUS for a year, only one fell pregnant. This compares with 10 for the normal IUCD, 20 for the Pill and 10-15 for the injection (Depo Provera). This is comparable to the effectiveness of sterilisation.

Mirena acts as a contraceptive in two ways: it makes the mucus at the neck of the womb (the cervix) much thicker, preventing sperm from getting through and it also makes the lining of the womb extremely thin, stopping implantation. In some women it prevents egg release (ovulation).

A. Side effects with Mirena are most common during the first three months after insertion and decrease over time.
SIDE EFFECTS AT                3 MONTHS AT 5 YEARS
Lower abdominal pain (cramping) 10.5%         2.0%
Acne or other skin problems      3.5%         1.8%
Back pain                        3.1%          1.0%
Breast tenderness                 3.1%         1.0%
Headache                          2.8%         1.6%
Mood changes                     2.5% Less than 1.0%

Percentage of women reporting side effects during the first 3 months and fifth year of use.
CLINICAL STUDIES BY WOMENS HEALTH - INDEPENDANT
Ovarian Cysts: Progestagen hormones increase the chance of benign, simple ovarian cysts. This is more common with the higher hormone levels associated with the  pill. Overall the risk is about 3 times higher with the pill (1.2% in IUS Mirena users versus 0.4% normally). These cysts most often do not require any treatment and resolve on their own over 2-3 months. It is usual to arrange follow-up ultrasound scans over this time if they do occur.

Hormonal Problems: Although the IUS delivers its hormone directly to the lining of the womb, it does lead to a slight increase in progesterone levels in the blood stream. The levels are much lower than that found with the pill and usually don't lead to side effects.In our study we found that when they do occur, they are mild and only last up to 4-6 weeks

With small to moderate size fibroids, it is quite reasonable to use the IUS and our study has found that fibroids are less common in women who use the Mirena. A further paper has found that in a sample of 5 women studied, a Mirena actually reduced the size of their fibroids.